Becoming a Family Caregiver

For me, the saga began six years ago, when I offered to help a family member with some spring cleaning. I knew his place was a mess, but attributed this, stereotypically, to a single man’s lack of interest in housekeeping.

When I dove into the work, I was first puzzled and then fearful at what I found: hundreds of pieces of unopened mail, years old, randomly stacked around the apartment; threatening letters from the Internal Revenue Service; correspondence from the city about a tax lien on his condominium. This, in the home of a man who, as an actor and writer, memorized scripts in two languages, had served on the national board of his union, and could solve complicated math problems without using a calculator. Clearly, something was wrong well beyond the state of his apartment.

She has elicited rich and poignant accounts from her study participants.

Among many insights presented here, two are particularly striking:

First, health care providers often dismissed the concerns of these family members, delaying diagnosis. Some physicians attributed symptoms to hearing loss, depression, or fatigue. As one respondent said:

“When it first began it was very, very frustrating because I knew something was wrong, and I couldn’t get his doctor to admit it. He [the physician] kept saying that it was his hearing and I knew it wasn’t his hearing.”

Second, none of the participants ever mentioned receiving help or support from a nurse; nurses seemed not to be present in their world of caregiving.